The message below sent to the Federal Tick-Borne Disease Working Group summarizes the work of the study group here in New Hampshire which included a number of Lyme treating physicians, State Epidemiologist, NAMI representative, chronic Lyme patients and numerous State Representatives.
A special appreciation goes out to chronic Lyme patient Kathie Fife who spent three years working to get this study commission approved.
Kathie Fife: Lyme and ticks
https://www.conwaydailysun.com/opinion/columns/kathie-fife-lyme-and-ticks/article_fd578e1a-75b0-11e9-881e-fb29614614f6.html
We appreciate all the chronic Lyme patients who traveled to Concord to testify on Aug 23, 2021
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html
Special thanks to the Lyme treating physicians who provided presentations to the commission:
-Dr. Sam Donta regarding Western blot interpretation
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/Proposed%20Amendments%20to%20the%20Final%20Report.pdf
-Dr. Richard Horowitz with publications referencing 200 chronic Lyme patients and Western blot results
https://pubmed.ncbi.nlm.nih.gov/30863136/
https://pubmed.ncbi.nlm.nih.gov/30400667/
-Dr. Joseph Burrascano representing IGeneX through a PowerPoint presentation
https://www.dropbox.com/s/8swn8bet7z1alby/CLINICAL%20ASSESSMENT%20OF%20LYME%20AND%20ASSOCIATED%20TICK-BORNE%20INFECTIONS.pptx?dl=0
It should be noted that Dr. Jeffrey Parsonnet representing the Infectious Diseases Society of America (IDSA) resigned after the second meeting.
Summary email to the Tick-Borne Disease Working Group:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: "Dennis.Dixon1@nih.hhs.gov" <Dennis.Dixon1@nih.hhs.gov>, "SSood@nshs.edu" <SSood@nshs.edu>
Cc: "tickbornedisease@hhs.gov" tickbornedisease@hhs.gov (All members of the TBDWG)
Date: 03/16/2022 10:27 AM
Subject: HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
To the Tick-Borne Disease Working Group,
As a member of NH Governor Chris Sununu’s Lyme Disease Study Commission, please see the following summary for the twelve-month study relating to diagnostic testing for Lyme disease.
HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
“A commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases”
Gov Sununu’s Lyme Disease Study Commission Website
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515
Conclusion: CDC-approved serologic tests for Lyme disease are unreliable in all stages of disease.
Proposed Amendments to the Final Report
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/Proposed%20Amendments%20to%20the%20Final%20Report.pdf
-Dr. Sam Donta’s clinical observations from the January 11, 2021meeting
-Western blot bands identification chart
-Dr. Richard Horowitz Western blot publications
-Dr. John Aucott Western blot publication
-Nine peer-reviewed published studies identifying low sensitivity
-State of Maine Department of Health; less than 50% present with rash
-Tick-borne Disease testing laboratories IGeneX (Medicare approved), Galaxy Diagnostics and Milford Molecular Diagnostics
Lyme Disease Rash Poster
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/Maryland-DMHMH-Lyme-MD-poster-final.pdf
-Looking for a bull's eye? You could be way off target when diagnosing Lyme disease
Video Recordings
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html
-Patient testimony from the Aug 23rd meeting describing a disease that is destroying lives, ending careers while leaving the patient in financial ruin
Documents
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515
Note: 57 Documents have been shared with the Committee members over the course of this study and stored on this website. Dr. Richard Shulik’s testimony is included as he has seen first-hand how Lyme disease is capable of ruining lives here in New Hampshire.
New Hampshire State House Hearing of 01.28.2010 (Dr. Shulik testimony)
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/New%20Hampshire%20State%20House%20Hearing%20of%2001.28.2010.pdf
Carl Tuttle
Hudson, NH